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Onconova Therapeutics and Pangea Biomed are teaming up to identify biomarkers that can help predict a response to the experimental cancer therapy rigosertib in people with recessive dystrophic epidermolysis bullosa (RDEB). Multiple clinical trials are underway to test rigosertib — developed by Onconova — as a potential treatment…
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People with epidermolysis bullosa acquisita (EBA) are at a higher risk of developing other autoimmune disorders, certain types of cancers, and heart diseases, a study suggests. The findings also indicate that other autoimmune diseases as well as some infections may be risk factors for EBA. The study, “…
Gold weight implants were safely implanted under the eyelids of a woman with recessive dystrophic epidermolysis bullosa (RDEB), according to a recent report. Despite their limited effectiveness in reducing her difficulties completely closing her eyelids — a condition called lagophthalmos — the “safety and tolerability of the gold weight…
My son Jonah turned 14 at the end of last month. To celebrate, he invited 10 (!) kids over to our house to hang out. They played basketball, darts, and pingpong and rode our go-kart. Except when they wanted food or cake, Jonah didn’t need me. I didn’t need to…
As columnist Patrice Williams’ son Jonah, who has EB, turns 14, she faces the difficult realization that maybe it’s time to learn to let go.
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Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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